Barb0802 Posted July 2, 2007 Share Posted July 2, 2007 Hi, I hope this is my 2nd post, I just finished typing it out and I think it got deleted because I didn't have a "subject"... anyway, here goes... My dad was just diagnosed with inoperable non-small cell lung cancer(adenocarcinoma)... They say it's stage 4 because it's inoperable, is that true? He's going for chemotherapy(don't know how many days a week or anything) and take Tarceva, that's chemotherapy in a pill, right? Does anyone have any experience with stage 4 sclc adenocarcinoma? Anyway, I just wanted to let you all know what I was doing here, I'll continue reading your stories (of course searching for positive stories) amazing how I'll read one good one and feel so much better.. Thanks, Barb Quote Link to comment Share on other sites More sharing options...
ztweb Posted July 2, 2007 Share Posted July 2, 2007 Barb, Welcome aboard. I am so sorry you needed to find us, but I am glad you did. I, personally, do not have experience with the type of cancer that you mentioned, as my dad had SCLC, which is seemingly quite different, but I know there are others here in your shoes. I am sure they will be speaking up soon! Please know you have my prayers. Jen Quote Link to comment Share on other sites More sharing options...
Barb0802 Posted July 2, 2007 Author Share Posted July 2, 2007 Thanks for the welcome Jen... sorry it's under these circumstances... Quote Link to comment Share on other sites More sharing options...
Barb0802 Posted July 2, 2007 Author Share Posted July 2, 2007 Thanks so much for the warm welcome... I feel better already Quote Link to comment Share on other sites More sharing options...
ernrol Posted July 2, 2007 Share Posted July 2, 2007 Barb, Welcome to the site. Stage IV cancer is usually inoperable. It is treatable. I was diagnosed stage IIIb/IV the same as you dad. I had chemo and Tarceva. I had Carboplatin and Taxol for the IV chemo. Your dad is probably having something similar. On July 7th it will be 2 years and I feel fine. You can check my story here just click below and it will take you to it: http://lchelp.org/l_community/viewtopic.php?t=25376 Not having surgery may not be that bad. I have two complete lungs and no after problems from surgery. If you have questions e-mail me. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Welthy Posted July 2, 2007 Share Posted July 2, 2007 Barb, Welcome to this site and sorry it is under these circumstances. Many here are children or spouses of Stage IV adenocarcinoma patients. There is a wealth of information in the profiles of everyone. That is a great place to start and familiarize yourself with this disease. The most important thing is that all stage IV diagnoses are not the same. Tumor burden and cell differentiation is a large factor. Keep an upbeat attitude as you begin this journey with your Dad. My husband had most of the above odds against him and he is past 27 mos now. Regards, Welthy Quote Link to comment Share on other sites More sharing options...
Don M Posted July 3, 2007 Share Posted July 3, 2007 Hi Barb: I just want to welcome you. Don M Quote Link to comment Share on other sites More sharing options...
Wendy Posted July 3, 2007 Share Posted July 3, 2007 Hi Barb, I am sorry to hear about your dad's diagnosis and that he has begun his lung cancer journey. There is HOPE!! I was stage III - Adenocarcinoma/non small cell for 2 years, and VI now for 1 1/2 years - 3.5 years total and LOVING life. (See my signature for details of my treatment). I am on Tarceva daily, which is indeed a pill you take at home. In addition to my story, there are many others like it shared daily at LCSC. Read some of the survivor stories for more inspiration. Wendy Quote Link to comment Share on other sites More sharing options...
fillise Posted July 3, 2007 Share Posted July 3, 2007 Barb, My mom has stage IV NSCLC--inoperable. She completed 4 rounds of carbo/taxol chemo with significant tumor shrinkage. Sge's doing well right now and I've been inspired by the many long term survivors on this board. There is hope! Susan Quote Link to comment Share on other sites More sharing options...
Barb0802 Posted July 3, 2007 Author Share Posted July 3, 2007 Wow, you guys are awesome!! congratulations to each of you on your successes (or with your family members)... You've given me so much hope already!!!! Yes, I will continue to read each of the profiles and try to learn the "terminology"... thanks for the advice. Can someone tell me what NED means? It seems to be that it may be No evidence of disease???? Thanks again to all of you for taken the time to respond to me.... love ya' already!! Quote Link to comment Share on other sites More sharing options...
Judy-OK Posted July 3, 2007 Share Posted July 3, 2007 Welcome Barb and you are correct NED = no evidence of disease which we would all like to be able to place after our signature boxes. I am one year out from treatment for inoperable nsclc and at this time go for a PET scan every 3 months. I go back in about 3 weeks for my next one. As of last check they say my condition is "stable". All my friends say that definitely does NOT refer to my mind. Keep a good positive attitude and expect a miracle. Quote Link to comment Share on other sites More sharing options...
Barb0802 Posted July 3, 2007 Author Share Posted July 3, 2007 "Judy-OK"]Welcome Barb and you are correct NED = no evidence of disease which we would all like to be able to place after our signature boxes. I am one year out from treatment for inoperable nsclc and at this time go for a PET scan every 3 months. I go back in about 3 weeks for my next one. As of last check they say my condition is "stable". All my friends say that definitely does NOT refer to my mind. Keep a good positive attitude and expect a miracle. Hi Judy!! I had to laugh at the "stable" part... maybe that's what conquers this thing!! My father sure has a few screws loose... ha ha Thanks so much!!! Quote Link to comment Share on other sites More sharing options...
Barb0802 Posted July 3, 2007 Author Share Posted July 3, 2007 "ernrol"]Barb,Welcome to the site. Stage IV cancer is usually inoperable. It is treatable. I was diagnosed stage IIIb/IV the same as you dad. I had chemo and Tarceva. I had Carboplatin and Taxol for the IV chemo. Your dad is probably having something similar. On July 7th it will be 2 years and I feel fine. You can check my story here just click below and it will take you to it: http://lchelp.org/l_community/viewtopic.php?t=25376 Not having surgery may not be that bad. I have two complete lungs and no after problems from surgery. If you have questions e-mail me. Stay positive, Ernie Hi Ernie, Thanks so much for responding. My father will start on Monday. Do you know how long it takes to know if the treatment is working? My dad has the tiniest little nodule on his lung, they couldn't believe that, that little thing would cause so many swollen lymph nodes. We brought him to Sloan Kettering... I just wonder if they could be wrong and it's not even lung cancer... if they can't believe an 8mm nodule could cause all this activity, then why would they decide on lung cancer? My dad has never smoked either... Sorry, didn't mean to lay this all out on you, I'm just second guessing Sloan Kettering now, because, I am just soooo much smarter than them... ha ha Quote Link to comment Share on other sites More sharing options...
ernrol Posted July 3, 2007 Share Posted July 3, 2007 Barb, They were able to tell the chemo was working for me after a couple of weeks because the fluid went down. After a couple cycles they should do a scan and they should be able to tell then. You need to fill out the profile on your dad. If all he has is an 8mm nodule, then I don’t see how it can be stage IV. Here are some definitions of stage III and IV. Stage III non-small cell lung cancer - Cancer has spread to structures near the lung; to the lymph nodes in the area that separates the two lungs (mediastinum); or it has spread to the lymph nodes on the other side of the chest or in the neck. Stage III is further divided into stage IIIA (usually can be resected) and stage IIIB (usually cannot be resected). Stage IV non-small cell lung cancer - Cancer has spread to other parts of the body. If at any time you have any doubt about the diagnoses, and then consider a second opinion. Here is a web address that list of places that give second opinions. http://blochcancer.org/articles/xtrnew.asp Try to do his profile. Keep us posted. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Barb0802 Posted July 3, 2007 Author Share Posted July 3, 2007 Hi Ernie, The Dr. said it was considered stage 4, because it is inoperable. His lymph nodes are swollen throughout his neck and torso. Could that be why? Quote Link to comment Share on other sites More sharing options...
ernrol Posted July 3, 2007 Share Posted July 3, 2007 Barb, The reason it is inoperable is because they think that it is stage IV. The reason they say it is stage IV is because of the lymph node involvement in the neck and torso. If these lymph nodes have cancer cells in them then it would be stage IV and most likely inoperable. It can be treated by chemo with success. I would get a second opinion just so that I am sure of their diagnoses. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Barb0802 Posted July 3, 2007 Author Share Posted July 3, 2007 Hi Ernie, they removed one lymph node in his neck last month. that showed to be cancerous. Sloan is kinda the 2nd opinion, he lives in PA, and the Drs. there diagnosed the cancer. Quote Link to comment Share on other sites More sharing options...
ernrol Posted July 3, 2007 Share Posted July 3, 2007 Barb, I went to Sloan Kettering for my second opinion and they agreed with my doctors in Naples. They said that since chemo can be the same anywhere in the country that I would be better for me to take my treatment in Naples. I was glad that I did. Here is the treatment they gave me. Below is a list of drugs that I had at each chemo session. I had this once a week for three weeks, then one week off. This made one cycle. I had a total of 4 cycles plus one session, at that time I was in remission. I also took Tarceva 100mg daily and still do. Taxol 30MG Chemo Carboplatin 50MG Chemo Cimetidine 150MG Tagamet for anti nausea Decadron 1MG anti nausea Benadryl 50MG antihistamine drug Aloxi 25MG nausea and vomiting I think the 100mg of Tarceva instead of 150mg may be one of the reasons I had little side effects from the Tarceva. If you have more questions just PM or e-mail me. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Barb0802 Posted July 3, 2007 Author Share Posted July 3, 2007 Thanks so much Ernie... I'm sure I'll have more questions once this thing gets going... thank you for not getting sick of me..... yet!!! I've printed out your diet/supplements along with the medications you were or are taking from this posting... hope you don't mind Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 3, 2007 Share Posted July 3, 2007 Hi, Barb, and welcome to the group! You can read my profile below, which at the moment is up to date, and in an hour I'll be heading down to my oncologist's office to get the results of last week's CT scan. If it's stable or better, I'll be getting another Avastin treatment. If not, then some adjustments may be made. As you probably know by now, adenocarcinoma is the most common form of lung cancer, accounting for 30-35% of all primary lung tumors. Well studied, and treatable. My best wishes for your dad, and keep those messages coming! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Barb0802 Posted July 3, 2007 Author Share Posted July 3, 2007 more info from my sister: metastasis to mediastunum, glands around lung, neck, and above clavical. and also into adrenal glands and small spot on one of his hips...don´t remember which one. that, they may treat with radiation at some point....they´ll have to see. 8mm tumor in lung Does this change anything? Quote Link to comment Share on other sites More sharing options...
Barb0802 Posted July 3, 2007 Author Share Posted July 3, 2007 Thank you Reece101 (a.k.a NED!!!) I'm hoping that your visit went well today!!!! Quote Link to comment Share on other sites More sharing options...
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